I Don’t Have a Memory Problem – I just forget things - sometimes

Okay, I have to concede, knitting is not really as effective as bicycling when it comes to physical exercise. I did eventually find an article that mentioned knitting and other craft work in the same exercise category as bicycling, running, playing football, and wrestling alligators (I did NOT make that up), but alas, it was an article promoting a particular type of muscle strengthening exercise program*. They didn’t really mean that craft work would be adequate as physical exercise.

My friend, Kate Kelsall, sent me another article, however, that did talk about the value of knitting and other hobbies, such as reading, crossword puzzles, and quilting**. These activities, it seems, help exercise us in a very different way. They help prevent memory loss. In fact, the research showed that elderly people who engaged in activities such as these were approximately 40% less likely to have memory issues. Television doesn’t count and the research indicates that watching a lot of television can actually speed the memory loss process for some people.

I am not elderly yet, but I am still concerned with keeping physically and mentally active. Parkinson’s can definitely speed up the deterioration in both those areas. So far, I am doing very well at keeping mentally active. If there were a knitting marathon, I’d sign up in a heartbeat. I could even go for the triathlon, the big three: Knitting, sewing, and finishing all the puzzles in the comics section. If the championship puzzle happened to be a cryptogram, I’d be the sure winner. I don’t even need to look at the clues. Place your bets now!

My family and friends sometimes think I’m a little deranged. How many women ask for 50 lbs of broomcorn for their birthday? My husband wonders when he sees me come home with yet another small stack of good quality paper. Did I really need it? Maybe not, technically, but it was on sale. And what would I do if they sold out of this particular paper?

I have stacks of paper for making books and bins of wool fleece that, years ago, I dyed myself and hung out on the garden fence to dry. The wool is used for felting projects and for my occasional felting workshop. The workshops are always free and there is a basket for the odd donation for materials used. This means, of course, that when I get a $10.00 donation, I know I can go out and purchase $10.00 worth of paper, or cloth, or wool, or yarn... or I forget that I already spent the money on one type of craft supplies and spend it again on something else. What was that about craft activities and memory?

I figure I have the mental exercising down. This does leave the question of staying physically fit. I already know WHY I need to do this. I already know the consequences of not staying physically fit. I just need to figure out what works for me. In this regard, I am being challenged everywhere I look. The Unity Walk is coming up in New York City. Though I would love to attend and do the two mile walk around the park to raise money for research, we simply cannot afford the plane tickets at this time.  This gives me a perfect excuse to not walk two miles.

Davis Phinney has all sorts of bicycling events for people with Parkinson’s. They also raise money for research. Davis lives in Colorado so I guess I don’t have as much of an excuse to not participate in some of his events. He always has something going on right here in my home state. Bicycling in a Davis Phinney event would be humbling, though. I mean, gosh, Davis raced in the “Tour de France”! Me? I’d have to get out the old Schwinn with the fat tires and clean it up a bit.

The last time I bicycled, I had a hard time riding around the neighborhood. It was work! Our neighborhood is perfect for cycling, walking dogs, jogging, and pushing baby strollers. I didn’t have to worry about dodging cars; I was more concerned with getting around the streams of people, dogs, babies, and tricycles. After about three blocks, I was exhausted and ready to go home, pour myself a glass of wine, sit, and knit for the rest of the evening. I might not be doing well on the physical exercise meter, but the mental/memory exercise meter is off the charts.

This made me wonder. I know that Davis Phinney has no problem keeping up with the physical exercise. But can he knit? Aha! Now, if he sees this and writes back, including a photo of the latest sweater he’s made, I’ll just have to concede defeat altogether. Time to get out the bike. But if he doesn’t, perhaps a challenge is in order. I’ll clean up the Schwinn if he gets out the knitting needles. I’d even supply some for him.

If I can remember where I put them.

*franchise.superslowzone.com/articles/exercise-vs-recreation.php

**http://news.bbc.co.uk/1/hi/health/7896441.stm

Voodoo dolls and squeaky wheels

My daughter and I decided on a knitting project that we will work on together. We’re going to make Voodoo dolls. Now, I’ve never actually heard of anyone KNITTING a Voodoo doll, but we’ll give it a go. Don’t worry; we’re not targeting any one person with this project. We’re targeting a whole group of people. Our Voodoo dolls will all be dentists.

As I said, we’re not targeting any one person or even any one dentist with this project. The dentists that we have all seem to be very nice people. It’s just that my daughter and I are convinced that their object in life is to torture those of us for whom cleaning our teeth is not a twenty four hour per day priority. I tried to argue that it’s hard to pay attention to teeth when you have another doctor telling you that you should have brain surgery. My dentist just smiled understandingly and told me that I needed to have my tooth extracted.

Having a tooth extracted doesn’t sound so bad. The meaning I found in the dictionary for “extract” is: “to draw out by effort”. That just means that the dentist will be working hard, right? They forget to mention that they will be knocking on your tooth with a hard hammer like instrument, wrenching it back and forth, and finally yanking it out of your jaw. They tell you they will numb things up and you shouldn’t feel a thing. Afterwards, in my case anyway, the dentist told me that the tooth was very inflamed. Perhaps that’s why I could still feel it even after 27 shots of Novocain. I’ve learned that next time (and I’m afraid there probably will be a next time) I will ask to be a little sedated. Hopefully the dentist has nitrous oxide. If there were ever a drug I could abuse, it would be nitrous oxide. A little of this lovely stuff and suddenly my dentist looks good, I’m floating slightly above the chair, and I don’t care what they do to me as long as I don’t have to move.

I’m not fond of dentists at the best of times, you may have noticed. And that means I avoid them whenever possible. Unfortunately, I was also born with a predisposition towards rotten teeth. 

Thanks, Dad. 

My dad had dentures by age 30 and when I started having lots of cavities early on, he simply smiled and told me I was taking after him. I was not amused and was sure that he was wrong. After all, this was the same man who told me that eating mashed potatoes would put hair on my chest. I didn’t eat potatoes for years and I’m still not fond of the mashed variety, which is too bad, because with my teeth the way they are, it’s something I could actually eat.

I knew, however, that my teeth needed attention. The problem was there were other bits of me that needed attention, too. And that was just me. My family also had needs. It becomes a matter of the squeaky wheel getting the oil – or something like that. So, until the teeth started to complain, they were shoved to the far end of the to-do list. They remained at the far end while I drove my son to physical therapy appointments, my daughter to the orthodontist, and I went back and forth between the neurology clinic and all the various evaluations needed to see whether or not DBS brain surgery was the appropriate treatment for me.

I finally made up my mind that I’d had enough doctoring and I was determined to stay far away from anything or anyone medical for at least six months. When I received my diagnosis, everything I read and heard about Parkinson’s told me that I should not let this disorder rule my life. I was seeing my life become a series of trips to clinics, therapies, and clinical studies. I wanted to just simply BE for awhile.

So my teeth remained at the far end of the to-do list as we fixed plumbing problems and made sure the car continued running. We only have one car. If it has a squeaky wheel, it gets immediate attention.

A year later, the teeth finally figured out the squeaky wheel thing and they decided to squeak loudly. Maybe I dawdled a little too long?  They haven’t stopped squeaking and I think there are at least a few more that want to abandon me as a lost cause. That upset me at first. Maybe I am taking after my dad in the teeth department? But after pondering awhile, even the thought of having all my teeth extracted wasn’t entirely negative. It would eventually mean one less doctor to see.

In the meantime, I will insist that my dentist see me tomorrow. Teeth are squeaking loudly enough that the bottle of whiskey is looking very tempting. And I’ll call and schedule my daughter’s oral surgery. Yet another one required for her orthodontic work. We were not pleased.

We’re still going to work on our Voodoo dolls.

Regular Exercise and Parkinson's

When I told the parents in my kindergarten class that I would not return to teach the following year because I had been diagnosed with Parkinson’s disease, I felt compelled to let them know that there were some positive aspects of this diagnosis.

These included:

1. Now I have something to blame things on. Every time I am a little spacey, uncoordinated, forgetful, or downright weird, I can just blame it on the Parkinson’s. It’s not me.

2. Now I have something in common with Michael J. Fox.

             and.....

3. No one will ever, ever expect me to run a marathon.

There were other reasons, too, why I looked at this diagnosis as being very positive. For one thing, my doctor had not been sure at first that this was Parkinson’s. Leave it to me to be just a little bit different and more complicated. I try hard. I went through several neurological evaluations and the doctor talked with me about a number of possibilities, including Huntington’s and a strange disorder which she referred to as “Wild Frenchman from Maine Syndrome”.

I almost wished I would be diagnosed with that last one. I think I would have had a different reaction when I told my family and friends. Tell others that you have Parkinson’s and the response is usually the same. “Oh, I’m so sorry.” This comes with a pat on the arm and a sad smile. Not that I minded, it’s just that I didn’t really know what to do with that. But just think of what would have happened if I'd told my family and friends that I was diagnosed with “Wild Frenchman from Maine Syndrome”. They'd be too busy laughing to feel sorry for me.  That I could handle. 

The possibility of Huntington’s was not something I wanted to contemplate.

When the doctor finally told me that she was 95% sure that I had idiopathic Parkinson’s disease, she had a big smile on her face and said, “Let’s hope it’s that!” We practically danced out of the room.

The reason that the doctor was so thrilled was because Parkinson’s is the most treatable of the neuromuscular disorders. The medications are impressive in how quickly they can make you feel like a normal person. And now, many researchers are saying that exercise can be one of the best treatments for Parkinson's, perhaps even better and more effective than medications and even surgery for keeping you moving. Walking, biking, dancing, and yes, even running marathons are considered to be GOOD for you.

Provided, of course, that you actually do it.

I was involved in an exercise study for 16 months. During this time, I rode my exercise bicycle for 30 to 40 minutes every day. I was stretching and even did some exercises with weights. And I recorded every exercise session. Once a month, along with the other members of our group, I met with the physical therapist who made sure we sticking to the program. We had to show our exercise logs to the therapist. I did well! Then the study was suddenly over.

It’s been about six months now since it ended and I have not exercised regularly since then. When I recently had to check in with the rehab doctor, I was gently scolded and urged to begin exercising again. Actually, when I think about it, she wasn’t really that gentle about it. She wanted to know what my barriers to exercising were. I said it was time. Life gets busy and it’s hard to have time to exercise.

Make the time, she said.

I had just about caved in and decided that I would have no other choice than to get on the bicycle again when something remarkable happened. A friend of mine told me about another exercise study that had taken place. This one showed, amazingly, that doing craft work, SUCH AS KNITTING, had the same health benefits as aerobic exercising! Wow. If this is the case, and I have no reason in the world to doubt this person (not to mention the fact that I have no desire to doubt her), then I can tell my doctor that I am exercising regularly. In fact, I am exercising about two hours per day!

Now, I know there will be a few people who will just have to go on the internet to see if this is really true. If you find out, let me know.  However, even if there are those who refute this information, I’m sure it’s just a matter of needing more research. For this, I’d be happy to be a guinea pig.

I’ve got plenty of knitting to do.

New Year's Resolution - busted already

I blew it already. I had such high hopes of keeping this year’s resolution ALL year, without slipping. These resolutions are important. We really should be good role models for our children, shouldn’t we? And, of course, I foolishly thought that this would be an easy resolution to keep. I am finding that the art and skill of dawdling is taking a lot more attention than I had imagined.

Sadly to say, I found myself multi-tasking yesterday. I was riding my exercise bicycle, watching a movie, and knitting at the same time. Lounging in the dentist’s chair later in the day, I also had my knitting on my lap and managed to get about 10 rows done while the dentist did whatever he was doing in my mouth. When it came time to make dinner in the evening, there I was, making out my to-do list for the next day, scheduling an appointment over the phone, stirring the rice, adding broth to the chicken, and, naturally, I had my knitting on my lap, too. My mind was racing. What will I donate to our school auction? How on earth am I going to get all my sewing done on time? Did I just put cinnamon on the chicken?

What I can’t figure out, is why some people seem to think that multi-tasking is a good thing. They even brag about their ability to multi-task as though this is the absolute proof of their superior intelligence.

Who even invented that word? What does is really mean? I suspect that it means something like, “doing many things badly at the same time.” Moms everywhere, and dads, have a great deal of experience in doing many things at once, though not by choice. Some of us even become relatively good at it. I remember the days when my children were young and I would be holding a baby in one arm, nursing, and buttering toast with the other hand, all the while I was watching my toddler and trying to discourage him from climbing into the dishwasher. I could do almost anything one handed, even break eggs. Sure, I had to pull all the little bits of shell out afterwards, but hey, I could do it!

I also remember the day when I was so proud of everything I had accomplished. Two little ones, clean and fed and playing happily on the kitchen floor while I worked to clean up the kitchen and prepare dinner. I busily went back and forth between stirring the sauce on the stove, wiping down the counters, cutting up vegetables for a salad, and singing along with the latest children’s music playing on our old stereo. It was the perfect picture of domestic life.

Then the phone rang and someone knocked on the door at the same time. I quickly answered the phone and asked the person on the other end to hold on a moment. I answered the door to a neighbor wanting to borrow a couple of eggs. I invited her in and picked up the phone again, stirring the sauce slightly and turning on the oven to heat it up.

I had just turned down the opportunity to have a family portrait taken and receive a free 8 x 10 glossy photo, when my neighbor yelped and grabbed my sleeve. Smoke was pouring out from underneath the stove and little flames were beginning to appear. What the.....????

I dropped the phone and opened the broiler drawer that was underneath the stove and found that my son had decided that this drawer made a perfect bed for his stuffed bear. As soon as I had turned on the oven, we had fried bear. Fortunately, there was just a tiny corner of the bear that was actually flaming and I was able to pick it up with tongs and put it in the sink, turn on the water, and douse the flames quickly. By then, I could smell the sauce burning, the kids had managed to knock over the cutting board, and the vegetables were scattered on the floor. I could hear someone on the phone loudly shouting HELLO?! My neighbor had taken her eggs and run. I briefly considered returning the bear to the broiler and serving it for dinner.

I looked forward to the day when the kids would be old enough that I could go back to work. My goal was to have a job that didn’t require doing more than one thing at a time. So, what did I do? I taught kindergarten. But at the very least, I did have a 45 minute break every day.

Now that I am retired, I am determined to take life more slowly. A couple of years ago, my oldest son gave me a wonderful book, titled, In Praise of Slowness, Challenging the Cult of Speed, by Carl Honore, which describes the origins, intent, and benefits of the “slow movement”. It talks about how our culture has become dependent on clocks, how we schedule our lives and try to fit in as much as possible. Even our children’s play time is scheduled into “play dates” and we hurry to get them from play to music lessons to school to dinner to bed. It also tells how we can change this attitude towards life and time. I like the idea of a slow movement. What could be better? In the spirit of the book, I began reading, and two years later, I’m still on chapter two.

One of my favorite bits in the book, so far, is when the author talks with a Buddhist teacher about these subjects of time, living by the clock, and scheduling our lives. Nearing the end of their conversation, the Buddhist teacher suddenly looks at his watch and, very sheepishly excuses himself. He had an appointment to keep and would have to hurry to get there.

Like I said, dawdling takes much more attention than I realized. Going slow is an attitude change, even when life throws everything at you at once. It’s about having a balance, I suppose. I only know that if I’m not careful, I’m going to start multi-tasking again.

And that would never do.

New Year's Resolution

dawdle \dȯ-d^əl\ verb

I have finally, after much thought, decided what my New Year’s resolution will be. I know, I know...it’s already past the middle of January and resolutions are supposed to be made on the first, right? But, really, there’s no sense in hurrying this, you know. A New Year’s resolution needs to be chosen very carefully. It should be practical enough that you will have some motivation for keeping it and yet also show that you are one of those people who strive to take life seriously and make the world a better place just because you are serious about it.

My New Year’s resolution is to dawdle.

The word, “dawdle”, has several meanings in the dictionary, but the one I like the best is: “to take one’s time, proceed slowly, linger”. I like this and I take it very seriously. Taking one’s time is important. I know that our society seems to think that faster is better and multitasking is an important job skill, but I suspect there are jobs that would benefit from taking one’s time and proceeding slowly. Jobs like Secretary of State, Brain Surgeon, and the Mechanic who works on the big city trucks and snowplows are a few that come to mind immediately.

This definition is, of course, different from the other definition of dawdling, which is: "that which my daughter does every morning before school."

I can think of no better time to “proceed slowly” than when one is considering the possibility of having brain surgery. That was my conclusion, anyway, after some months of evaluations, tests, and fretting over whether or not this would be the best thing for me to do. My husband and I weighed the possible benefits against the possible side effects. We spoke to the surgeon, watched the information video, and did our own research. I spoke to a number of people who had already had the surgery as well as people who are on the waiting list.

Everyone I talked to who has had the Deep Brain Stimulation surgery, without exception, has said that it was very positive and they are glad they had it done. Any hurdles they had to go through were definitely worth the time and effort it took to get over them. Every one of these people said that their lives were better now than before the surgery. So why am I dawdling?

There are a number of reasons.

I should probably wait till I am through menopause.  Having surgery done now could confuse things.  If I start acting a little weird, no one will know what to blame it on.

But the biggest reason is that I still get along well, most of the time. I can take care of myself. I can walk, get up and down stairs, in and out of the car, and drive by myself. I can still type, write, and bore my family with stories. I can talk, sing, and shout at my kids. I am not depressed or anxious about my future.

When one person at a support group meeting, with the best of intentions, told me that I needed to have a more positive attitude and look at the glass as half full, I was a bit bewildered. I can’t honestly describe my glass as being half full. It isn’t. But it's not half empty, either.  It’s overflowing! I have said it over and over. My life today, despite my Parkinson’s, and perhaps even to some degree because of my Parkinson’s, has never been better. I feel happier and healthier than I have ever felt before.

Why mess with that?!

So I’ll wait. My kids are glad because they have just gotten used to the daily comedy routine of watching mom flailing with knives in the kitchen, walking backwards while swearing, and occasionally falling to the floor. My husband is glad to not have to worry about the possible risks connected with having any sort of brain surgery. My friends are glad because they won’t have to listen to me fretting over this decision, at least for now.

And I’ll keep my resolution. I’ll find as many ways as I can to take my time. I’ll go slowly with my housework and try to honestly enjoy it. I’ll savor my art projects and not give myself unrealistic deadlines. And I’ll linger with my friends and take time to enjoy each of them as well.

This is serious business.

“When you do finally get time to yourself – dawdle!”

~advice given to me in 1998 by an expert mom.

The Show Must Go On

The other day, when I was at the grocery store, I made someone laugh. Not just a little giggle, but a deep, belly laugh. And the fact that it was a little old lady made it all the better. Making a little old lady laugh like that could be considered my good deed for the week. In fact, depending on who I talk to, I am sure I am earning the jewels in my heavenly crown and/or filling up with good Karma. I make people laugh a lot nowadays. I’d like to say that it’s my incredible wit or my charming sense of humor or maybe even my skills as a storyteller. Usually, however, it is my own unique style of moving that gets people going. Like many great comediennes before me, such as Lucille Ball and Patricia Routledge, I excel in physical comedy.

If only a Hollywood talent scout would discover me someday, I might actually earn a living at this. I don’t know if Hollywood talent scouts have ever looked for their next star in the cheese aisle of the local grocery store, but if they have, they might have seen something like what the little old lady saw that day. I turned, picked up a package of cheese (medium sharp cheddar, if I remember correctly), and when I turned back to put it in my cart, I suddenly froze. I stood for just an instant and then started walking backwards very quickly. That was it. It might not sound all that funny but physical comedy is really impossible to describe properly. It has to be watched. Good comedy depends on all those little details of facial expression (I could have sworn my feet knew where the shopping cart was parked), body language (boy, did I have a few choice words to tell my body), and exactly what kind of cheese one is buying. Based on the laughter that followed, this was one of my more successful forays into the world of physical comedy.

I have other comedy routines that come up quite frequently but the best one had to be the night we took our good friends out to dinner. Since we were treating them, I had decided that I would order something to drink from the bar. I was being a good hostess and making sure that our guests knew that they could order drinks, too. I also wanted to try a Marguerita. Having lived in Colorado nearly all my life, surrounded by some excellent Mexican restaurants, I felt funny admitting I had never tasted a Marguerita. So I ordered one.

I am not a drinker. Since my son graduated from Bartending College, I now know that bartenders measure liquor in ounces. I measure mine in teaspoons. My husband says I’m pathetic. I am the “sniff it and get tipsy” type of person and I swear I can feel the alcohol in an O’Douls. The waiter brought TWO Margueritas. I thought for sure it was a mistake and asked who else at the table had ordered one. That brought the first chuckles from my friends. They knew all along that it was Happy Hour. Both drinks were meant for me. So, as I grew up a good Catholic girl, learning that it was a sin to waste anything, I slowly and carefully took my first sips. I continued sipping while I was eating and while we were talking and while a few members of our party ordered desert.

By the time we were ready to go, I had managed to drink all of one Marguerita and most of the other one. It was also that time of night when my Parkinson’s symptoms are at their worst. I got up from the table slowly and walked very stiffly out of the restaurant and out to the car. I did not drive home. In fact, I fell asleep in the car and slept all the way home. The next time I saw my friends, I learned that I had inadvertently provided them with a delightful comedy show. I tried to tell them that it was just my Parkinson’s but it was no use. That just made them laugh all the harder, clutching their sides to prevent hurting themselves, “You were great! I didn’t think you were going to make it to the car!” And when I protested further, they said, “Yeah, right. Terri...next time...stop at one, okay?”

And have them miss out on the comedy?

I figure that this is one of the many gifts that I’ve received since finding out I have Parkinson’s. I’m sure that Lucille Ball and Patricia Routledge had to work much harder to develop the physical comedy skills that I’ve come by naturally. There is always a silver lining and I know that falling now and then just means that I’m well grounded. I hope that, whatever else happens in my journey, I will never lose the ability to make people laugh.

“There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.”
~Erma Bombeck

“What is comedy? Comedy is the art of making people laugh without making them puke.”

~Steve Martin

Mercury

When I was in high school, I remember being told that I should enjoy those years while they last because they were the best years of my life. As a teenager, that was the most depressing bit of news I could ever imagine. Those were the BEST years of my life? Really? Thankfully, I learned that it wasn’t true at all. Since then, every day and in every way, it’s gotten better and better. The last few years have been wonderful and, in fact, yesterday was a particularly good day. Yesterday I discovered that, when you are out of chocolate syrup, a small amount of Bailey’s on vanilla ice cream is a decent substitute.

When I have an off day, there’s usually a reasonable explanation for it. I can blame my Parkinson’s or my medication, or something even more obvious: either I had to wait in line at the bank, or my husband decided to make lima beans for dinner. When I was teaching, the off days usually had to do with the behavior of the children. As a conscientious teacher, I would take this personally and decide that I had certainly done something wrong. After all, if the teacher is doing their job properly, the children will behave, right?  There were times when I would be ready to commit myself to the nearest sanitarium (the one with very quiet, private, padded rooms) after 45 minutes of playground duty. After a rant to my assistant teacher, she would look at me understandingly; shake her head, and say, “Mercury is in retrograde, you know.” I would smile and nod, as if I knew exactly what Mercury was up to and why it’s decision to retrograde would have such a disastrous effect on young children.

On the whole, however, I have good days. If I have an off day, I take it personally. I must be doing something wrong. If I’m doing my job properly, the day should go just fine, right?

Recently, I offered to puppysit. I don’t have grandchildren yet, I have grandpuppies. My son and daughter-in-law have two beautiful lab puppies, one black and one chocolate. Rufus and Mosie are as delightful and curious as a couple of young children and just as mischievous. The nice thing is that they can occasionally be put in their kennel for nap time. I can even leave them there and go shopping. You can’t do that with grandchildren.

I had forgotten that I had an appointment for an MRI at the hospital that morning. I didn’t panic. The MRI was only supposed to take 30 minutes. I would have plenty of time to get home, feed the puppies, and take them for a walk, before delivering them back to my son and going to my own class that afternoon. Everything would be fine. Besides, my younger son was home that morning and even if he didn’t really like being woken up at the ungodly hour of 11 am, if the puppies needed something, he was there. He needed to be at his class by 2 pm. No problem. I was sure everything would go smoothly.

I waited over an hour at the hospital. I called and let the school know I’d be late. Then I phoned my son to see how everything was going. It seemed the puppies had gotten sick on the rug and peed in the house numerous times. He had spent the whole time cleaning up after them.  When would I be home? If I didn’t come home soon, he’d miss his bus for school.

In other words, all was well.

I was finally brought in for my MRI. I’ve never quite understood why I haven’t received any superhuman powers yet. I’ve been exposed to magnetic fields, plenty of radiation, and had radioactive dye injected directly into my veins. But I have yet to leap tall buildings with a single bound, turn invisible, or even stretch my arms from the dining room to the refrigerator. What I do instead, is turn into the human pretzel. Somehow the MRI machine triggered my dystonia big time. My arms and legs twisted up so badly after the test, that I could barely make it to the wheelchair, where I was invited to sit while they wheeled me directly to my car in the parking lot. I’m not sure exactly why they thought I was in any shape to drive, but they left me at my car. I sat in the car for a while, waiting for my arms and legs to straighten out again.

Somehow I then managed to drive home, put the puppies in their kennel, put my son in the passenger seat, drive him to his school, and deliver the puppies to my other son. I was very late for my class and, by the time I showed up, half the students had given up on me and left. I was ready for that quiet, padded room.

I'll bet that darn Mercury was up to something. 

Experimenting

During my last two years of teaching, I had a lovely assistant teacher who was also an aromatherapist. I swear she kept me upright during those two years. She would often take just one look at me as I walked into the room and then go to her supply of oils, bringing one out for me to smell or to put a drop onto my tongue. Mostly, this was a pretty non-invasive way of dealing with my challenges, and it worked! I was able to get through those years as my Parkinson’s was starting to take hold of me more and more.

April was also an amazing cook and I include her oat porridge as one of the most delightful of her aroma therapies. She was responsible for baking bread with the children every week and when it was ready, she would mix real butter and a little bit of vanilla extract to make a spread that was unbelievably good. I gained about 10 lbs over the two years we worked together. The kindergarten children, who are notoriously picky eaters, would ask for seconds and thirds of nearly everything.

However, I didn’t wholeheartedly endorse everything she put before me. Generally speaking, most of what she gave to me was exquisitely good, which meant that I forgot to be careful. Yerba Matte is a tea that is popular in South America. The South Americans, I believe someone once told me, load this tea with sugar and milk before they ever risk having it touch their taste buds. I will admit, my experience with it was brief. One taste of this incredibly bitter beverage and I felt like spitting it across the room. I didn’t do that, however, because that would be unbecoming in a kindergarten teacher. Instead, I made such a face that I am still teased about it.

Similarly, I have learned to appreciate April’s hot cocoa with red pepper added to it.  It's good, as long as there's not too much pepper! I’ve had to experiment. My first try resulted in my suddenly being unable to breathe as the pepper attacked my tongue and throat. I coughed and spluttered, with tears running down my face. It took awhile to find the proper dose. Further experimenting with another remedy, peppermint oil, taught me to not put an entire drop of this oil on my tongue. It yielded another coughing fit and I felt I was breathing clouds of peppermint as a dragon breathes fire. A tiny amount can work wonders. Finding the right dose is pretty important.

I have had to learn to be cautious about my medications, too. I had tried dopamine agonists in the past and have had pretty dramatic side effects, so when my doctor suggested I try another one, I wasn’t sure I wanted to. But this particular medication, Requip XL, is a little different. For one thing, you just take it once a day. It is a controlled release drug and doesn’t have nearly the side effects that the regular drug has. I decided to give it a go. My doctor and I began a week of experimenting with different combinations and dosages of the drugs.

After this week, I can say, without a doubt, that I can’t imagine anyone willingly experimenting with drugs of any type.

The first day, I spent flat on my back. I felt miserable, like I had the flu. The next day, something else happened. We finally figured out that the Requip was suddenly working so well that I had essentially overdosed on Sinemet (carbadopa/levadopa), and I was having "dykinesias" or involuntary muscle movements. This sounds pretty harmless but what this meant for me was that I literally could not be still. My heart was racing, my left arm and was moving around in a rhythmic pattern, my body was rocking back and forth, and I started having some strange obsessive/compulsive behavior.

In this rather manic state that I was in, I could suddenly see clearly, in every minute detail, everything that I needed to get done that week. I went around the house gathering all the supplies and materials for the crafts that needed to be finished for the craft fair that weekend. I put them all in our dining room, on the table, the chairs, and on the floor. I couldn’t stop! I also couldn’t be still long enough to actually do any craft work. I was exhausted and miserable. When I drove to school to pick up my daugther, the dyskinesias were still there, though milder. At least I could have music playing loudly in the car so that, if anyone saw me moving about, they might just think I’m attempting to move to the music.

By now, we’ve done enough experimenting that things are leveling out again. I can take the Requip as long as I cut the dose of Sinemet in half. I have had three days now where my dystonia has been kept to a minimum and I have had very little in the way of dyskinesias. I get queasy on and off during the day, but not enough to stop me from doing what I need to do. There are still some “off times“ and I still have some dystonia, but it has become more manageable. For now, the experiment has paid off.

My health is a bit more stable and the side effects aren’t nearly as bad as the Yerba Matte.